I have had MS for 22 years. About 6 years ago I was told that it was SPMS. I filled my PIP in and was awarded high rate for both mobility and care. Beginning of 2019, I saw another neurologist and she said that my disease is active RRMS with progression due to the length of time I have had the disease. As these letters, were flying around, my dad was taken seriously ill and died just 10 days later. I have only recently read these letters - do I need to tell PIP? Any advice would be welcome.

it does frustrate me that they have to call it RRMS, SPMS or PPMS as they affect everyone differently so surely just having MS should be enough.

I would say No. You have high rate on both elements, so you won’t get more. Prodding the DWP never works well.

It’s not about the money - I just have worries that they will come banging on my door and saying I have committed fraud!! Part of me feels it may well change to SPMS - the neurologist did say that I was very unlucky and unfortunate to still have active disease.

You have ms so you’re not keeping things away from DWP. Even if symptoms are getting worse they will not give more as you have high rate.

Hi Micha, please do not worry. You do not receive PIP for the condition you have but how your disability affects you.

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Thank you. I think it is in the front of my mind because I am just going through ESA review and have to go for an assessment. That has the new information on it. But it still says it’s active RRMS with pseudo progression - whatever that means!! She said I am very unlucky and unusual to still have active disease!! Can’t help but worry cos of the stories you hear. Part of me feels - it is about how things affect me - not what letters are in from the MS. It is MS - there’s no doubting that. X

Hi Micha

As everyone else says, I wouldn’t tell them. They don’t make their decision based on the letters, but on how the condition affects you. That hasn’t changed, and that’s all that matters. If you wanted, you could always phone them to check, but I’m sure that’s what they’d say, so be reassured :slight_smile:


Playing devils advocate here. It states CLEARLY any changes must be reported. If it was me i would report change as a curtesy. IF you dont and they the DWP find out about it, they can use that. I doubt very much it will change the outcome if anything it shows your MS is MORE ACTIVE not less.

so no you wont get more, but you COULD get LESS. this explains changes.

its says if your conditions gets WORSE…

Yours has got WORSE. as your MS is active. You may be awarded enhance for longer.

anyway just my thoughts. and i am so sorry for your loss it cant have been easy for you. xxxx

Hi, no dont worry…I have been through the PIP system recently. I go on Scope support forums and they have people very well up on PIP rules. Differently to DLA, PIP doesn`t need to know about a diagnosis…only about how it affects you. …what equipment you need…if you ned help from another person.

The descriptors for each activity on the PIP claim form have to be taken notice of, when applying for PIP. Describe exactly how each activity is done…

The only time you need to inform DWP is when your needs change…better or worse.

Hope this and replies from everyone, answers your question.


Hi love, whatever type of MS you have is irrelevent, it’s how it effects you, so know I would leave well alone, you obvisiously have these issues, so why would they not believe you, don’t worry.

Thank you for your words - I just don’t want to be doing something wrong. Actually when it changed from RRMS to SPMS, I didn’t tell them. But I guess in my mind, SPMS is worse than RRMS but then I am still learning about the disease. I also feel the neurologist was playing with wording so I qualified for DMDs which I haven’t started!!!

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Bouds, that’s reassuring to hear. I think in future I am just going to write Multiple Sclerosis and they can argue the rest out between themselves. I just know how this stupid disease affects me not the workings of it!! Maybe naive, but it’s all my brain cell can cope with. Xx

Thank you for your words - I guess it’s all the stories you hear about and I don’t want to have mislead them.x

Hope you fel more settled now chuck